Re: New Script for Kineret

[Guest guest]

Oh ;

I'm no help with the Kineret or the eye problem but it is so good to see you

post. We miss you also. Many wishes for better days for you. Many hugs also,

melt

New Script for Kineret

Hello all.

from Texas here. I think of everyone very often.

Merry Christmas! / Happy Holidays!

XO

[Guest guest]

Thanks Patty!

I know will be okay.

Know that although we aren't there with our arms around you, if you

concentrate, you will be able to feel our arms around you.

XO

mellymelt wrote:

Oh ;

I'm no help with the Kineret or the eye problem but it is so good to see you

post. We miss you also. Many wishes for better days for you. Many hugs also,

melt

New Script for Kineret

Hello all.

from Texas here. I think of everyone very often.

Merry Christmas! / Happy Holidays!

XO

[Guest guest]

Hi ,

I can't really answer any of your questions but just wanted to tell you that

it's really good to see a post from you. I can tell you from my experience

that Kinneret hurts but I wasn't on it very long so don't know if it would

have eventually been helpful. Sorry, can't help you with the eye problem

either but wish you luck in getting it resolved. I'm sure others will be able

to

respond to your questions. Good to hear from you. Have a wonderful holiday

season.

Love,

Barb in SLC

[Guest guest]

,

Early on, pre-diagnosis with AOSD, I had occasional problems with

extremely inflamed eyelids. That's when I thought the Still's rash

was an allergic reaction and the puffy eyes were part of that. I also

saw a poster at the hospital yesterday about a lecture on eye

problems related to Lupus. This has led me to believe that there

could likely be a connection between the inflamed eye and Still's.

As for the Kineret, I have been on it for almost three months. The

shots do hurt a bit, but it only lasts a few minutes. I started out

having some bad injection-site reactions. I have taken Zyrtec to help

with the reactions when they seem particularly bad, but they seem to

have subsided after the first six weeks or so. I take the Kineret in

combination with MXT and a low dose of pred. I have continued to have

some ups and downs but I have had some weeks since starting Kineret

that were better than any weeks before when I was just on the MXT and

pred, so I hope this means it is doing something good. The Kineret

comes in premeasured syringes of 100mg. (I think) and I have found it

fairly easy to use (I do not use the autoinjector). There is still

some unpleasant pain with the injection and I have found that there

is less burning if you wait for the alcohol swabbed on the injection

site to dry before you inject rather than poking the needle in

through the still-wet with alcohol skin. This was an instruction I

got from the RN that trained me to give myself the injections.

Good luck!

in NYC

>

> Hi ,

> I can't really answer any of your questions but just wanted to tell

you that

> it's really good to see a post from you. I can tell you from my

experience

> that Kinneret hurts but I wasn't on it very long so don't know if

it would

> have eventually been helpful. Sorry, can't help you with the eye

problem

> either but wish you luck in getting it resolved. I'm sure others

will be able to

> respond to your questions. Good to hear from you. Have a

wonderful holiday

> season.

> Love,

> Barb in SLC

>

>

>

[Guest guest]

In a message dated 12/16/2005 8:47:07 PM Pacific Standard Time,

heaven_bound@... writes:

Keep in touch.

Merry Christmas!

XO

Is this the who used to work for the airlines??? If it is, HELLO! If

not, hello as well! I've been on Kineret for almost a year now. I'm having other

problems right now, but Kineret has helped a lot. I don't do my own shots,

hubby does mine. Sometimes the injection hurts, sometimes I don't feel a

thing. Seems like a crapshoot. I definitely say to try it. Good luck.

Carole from Hollywood FL

[Guest guest]

Thank you Barb for your kind note.

I am glad to be getting involved with the group.

What was painful about the Kineret? My doc said it would be when I inject it.

But suggested I ice the spot prior to pricking myself. YIKES! I just hate

starting new meds when you aren't sure what the reaction is going to be. You

know what I mean?

Thanks again.

HAPPY HOLIDAYS!

babsinsl@... wrote:

Hi ,

I can't really answer any of your questions but just wanted to tell you that

it's really good to see a post from you. I can tell you from my experience

that Kinneret hurts but I wasn't on it very long so don't know if it would

have eventually been helpful. Sorry, can't help you with the eye problem

either but wish you luck in getting it resolved. I'm sure others will be able

to

respond to your questions. Good to hear from you. Have a wonderful holiday

season.

Love,

Barb in SLC

[Guest guest]

Dear , I know that we have been formally introduced through our mutual dear

friend Lynnie. It will be very nice to meet you in person. Louise also wrote to

me about us all getting together over the holidays. I am behind on reading all

of my messages due to what else besides being sick. I ran across this message of

yours . Well you are not alone anymore about having eye problems related to

Stills. I have a lot of eye problems with it. I get uveitis and vasculitis

frequently. I also get inflammation of the lacrimal ducts. These problems were

actually some of the first symptoms that I began having when I originally became

ill with this disease. I am beginning to believe there is hardly anyplace in my

body that has not been systemically affected by Stills. My doctors say that I

have a lot of complications. I moved to the Houston area seeking better medical

help than I was previously able to have. I wish you well. My email is

mandyblue@... I Hope we will be meeting soon.

Merry Christmas, Mandy

in Houston wrote: Hello all.

from Texas here. I hope everyone is doing well. It has been quite a year

and I was unable to keep up with all the emails from the SD group.

I have been given a script for Kineret and wanted to hear some thoughts from

those who have used it. I understand it to be a daily shot and that it hurts.

Does it hurt you? How much to you take? Have you found it to help with SD? Do

you take anything else for SD in addition to Kineret?

Also, for those who know me, I have had a continuos problem with an inflammed

eye and lid due to SD. Has anyone esle out there had this problem? I know last

time I was online, I was the only one to experience this issue related to

Stills. Curious.

I think of everyone very often.

Merry Christmas! / Happy Holidays!

XO

[Guest guest]

I have been to about 6 different eye doctors and they have each said they

believe it is in relation to SD. They call it Epicleritis. I probably spelled it

wrong.

It is so red and the lid is swollen. I can't stand it but, things would be

worse.

Let me know if I can help in anyway.

I hope you will call when you have time. I know you're busy getting well and

helping your mom prepare for your company.

MERRY CHRISTMAS!

" mandyblue@... " wrote:

Dear , I know that we have been formally introduced through our mutual

dear friend Lynnie. It will be very nice to meet you in person. Louise also

wrote to me about us all getting together over the holidays. I am behind on

reading all of my messages due to what else besides being sick. I ran across

this message of yours . Well you are not alone anymore about having eye problems

related to Stills. I have a lot of eye problems with it. I get uveitis and

vasculitis frequently. I also get inflammation of the lacrimal ducts. These

problems were actually some of the first symptoms that I began having when I

originally became ill with this disease. I am beginning to believe there is

hardly anyplace in my body that has not been systemically affected by Stills. My

doctors say that I have a lot of complications. I moved to the Houston area

seeking better medical help than I was previously able to have. I wish you well.

My email is mandyblue@... I Hope we will be meeting soon.

Merry Christmas, Mandy

in Houston wrote: Hello all.

from Texas here. I hope everyone is doing well. It has been quite a year

and I was unable to keep up with all the emails from the SD group.

I have been given a script for Kineret and wanted to hear some thoughts from

those who have used it. I understand it to be a daily shot and that it hurts.

Does it hurt you? How much to you take? Have you found it to help with SD? Do

you take anything else for SD in addition to Kineret?

Also, for those who know me, I have had a continuos problem with an inflammed

eye and lid due to SD. Has anyone esle out there had this problem? I know last

time I was online, I was the only one to experience this issue related to

Stills. Curious.

I think of everyone very often.

Merry Christmas! / Happy Holidays!

XO